The youngest stroke victims

Posted: January 07, 2013

Sacha Downes was taking a shower when she felt a "weird" explosion in her head. Still dripping, she managed to reach the bathroom mirror, where she was stunned to see her face drooping on the right side. She stumbled to her bedroom and fell. By the time her mother dashed upstairs, Sacha was having seizures. She recalls her dad carrying her down the steps and sliding her into an ambulance - then nothing until she awoke in a hospital. "I didn't have any idea what was going on," Sacha says.

Derek Marshall was a 6-foot-4 football player in perfect health. He had never even had a cold. He played bass in his high school band, and had a pretty girlfriend. Before football, Derek had wrestled, run track, and played lacrosse. Now, after experiencing a "really bad" headache and double vision, he was whisked to Children's Hospital of Philadelphia where he spent most of the next two months.

Andrew Guadalupe was in the kitchen cooking noodles when he heard a high-pitched noise in his right ear and lost all sense of space. "I didn't know where my limbs were in relation to my body," he says. "It took me seven attempts to open a cabinet drawer because I couldn't find my hands. I felt dizzy and vomited." Three days later, at football practice, Andrew had similar symptoms plus a fierce headache. He jumped into the shower, then collapsed.

Sacha, Derek, and Andrew had all had strokes. Sacha was 11; Derek was 17; Andrew was 14.

Their parents were incredulous. Like most people, they were shocked to learn that children - their children - could be struck by a condition associated with the elderly.

The numbers are growing, according to a recent study of hospital records from 1995 to 2008 by the Centers for Disease Control and Prevention. It revealed a "concerning" 30 percent rise in the incidence of ischemic stroke, those caused by blood clots to the brain, in boys and girls between 5 and 14.

The reasons are unclear: It may be better awareness among doctors about stroke risks in young people, or improved capability of scans to reveal them.

Even more stunning is proof that babies, about 1,000 each year, can have strokes too, some even before birth.

Christine Tucker's fourth child, Nate, was one. As soon as Nate was born, his mother knew he looked "different." His head seemed a little "squished, and it worried me," she recalls. Although Nate looked alert and his Apgar score (a quick assessment of a newborn's health just after birth) was high, an ultrasound of his head showed a massive fluid collection in his brain. At three days old, he was transferred to Children's.

Tucker says she thought her child might have hydrocephalus, but she couldn't absorb that he had had a stroke.

The intensive-care doctor tried to help her understand by drawing a picture that is burned into her memory. She outlined a circle with a line in the center, and with a black pen, she colored in the left side representing the brain's left hemisphere. "It was almost all black," Tucker recalls. "I closed my eyes and by the time I opened them, she had already filled in a major portion of the right hemisphere. That's when it hit me: Almost my child's whole brain was affected."

A stroke, in a child or an adult, always results from a blood clot that migrates to the brain or a hemorrhage that originates in the brain. In newborns, the instigator may be the "peculiar hazards" of birth, namely, the shift from the infant's dependence on its mother's circulation to its own, says Rebecca Ichord, a pediatric neurologist at the University of Pennsylvania. Other conditions that affect pregnant women - diabetes, smoking, infections - might tip the balance, Ichord says. "But it isn't anything specific that the mom did, just the unfortunate circumstances of Mother Nature." Babies with congenital heart defects are prime candidates.

Half of older children who have strokes - like Sacha, Derek, and Andrew - had been remarkably healthy. At their age, strokes can result from a serious infection, a trauma, or a virus. Although obesity, high blood pressure, diabetes, and lipid disorders may be present and can lead to strokes in adults, Ichord does not believe they are the cause in those under 18.

Most of the children will not experience strokes again. Ten to 15 percent are even lucky enough to escape with no deficits. But most travel a rocky road. Ten to 15 percent need inpatient rehabilitation, and 60 to 70 percent will likely have long-lasting changes in their ability to learn and adapt to life.

Nate, now 5, had 12 surgeries - 10 on his brain - in three years. Despite some challenges - right-side weakness, impaired vision, trouble with balance - his mother calls him a "happy kid, socially amazing," who runs with a leg brace. "In school, they call him 'the Mayor.' He's always smiling," she says. "But the shock of it all hasn't gone away . . . . because you start to see the difficulties as they get older. It is heartbreaking to a parent because the future is a big question mark."

The 15 parents clustered around the table in Children's Wood Center nod their heads knowingly. It was the start of the Thanksgiving-Christmas holiday season, an emotional time for parents whose lives have been upended by the unthinkable. During this monthly meeting of the Pediatric Stroke Support Network, pediatric neuropsychologist Lauren Krivitzky notes that the bouncy Christmas music and noisy holiday parties can irritate the sensitive brain of a child stroke patient. "You sometimes need an escape route from a party," says Stephanie Blatt, whose son Zakki had a stroke in his first month of life. "You may have to plan to leave early . . . . or stay home and make your own environment comfortable for your family. And who says you have to celebrate Christmas on Dec. 25? We make our own rules."

"At first, these parents are in shock," says social worker Lois Robbins, who leads the group. "In a second, their whole lives are altered. The first thing they ask is, 'Will my child live?' Then it becomes, 'Now what?' Their priorities change. Maybe it used to be getting ahead in their careers. Now it is 'Is my family OK?' "

No one would know, glancing at Sacha, now 12, that a year ago she suffered a stroke precipitated by an arteriovenous malformation. She wears a stylish purple jacket; her leg brace is hidden under fashionable jeans. But she takes blood thinners twice a day and can't run, jump, or play sports as she used to. She had wanted to be a writer, but says she's more disorganized now and doesn't feel she has the same ability. "I'd like to make a movie about what happened to me. I still think about it every day."

Andrew was told he would never again move his left side. But after one month as an inpatient and 30 more days in full-day therapy, he began relearning how to walk and use his arm. "It wasn't work to me," Andrew says. "I was getting my body back."

In January, two months after his stroke, he returned to school. He can no longer play ball, and needs daily medication to lower the risk of future clots. "But I wasn't set back academically," he says. "I'm studying to be an engineer."

Derek, who just turned 19, speaks softly and slowly and wears an eye patch. But his attitude is upbeat and he says he doesn't look back. His mother, Deloria, is grateful that her son survived a 15-hour surgery to repair a tangle of blood vessels on his brain stem (caused by a genetic condition called pontine cavernoma) and maintained his optimism despite being tethered to tubes for feeding and breathing and a catheter to drain spinal fluid, and suffering a collapsed lung and pneumonia.

Derek's dream is to play an instrument again. "He doesn't see his disability as an obstacle," his mother says. "I am in awe of him. My hope is to see him drive again, get his full mobility back, and become independent. As he says, 'For 17 years I was Derek. I'm still Derek.' "


Contact Gloria Hochman at gloriahoch@comcast.net.

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